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    • #23409
      Paula Patriarca
      Participant

      My husband’s ALS symptoms started slightly after having Covid in November of 2020.  After getting the vaccine in March 2021 they escalated dramatically.  We will not be getting any of the vaccines.  For some reason, they seem to worsen his condition and we do not want to take that chance.

       

    • #23423
      Dagmar Munn
      Keymaster

      Paula, I caution you to connect having the vaccine and causing ALS symptoms. It most likely was a coincidence.

      I had severe side effects following my first two vaccines. They were both Moderna. Then for the third, I switched to Pfizer – – no side effects at all.

      I would recommend a few days of feeling the effects of either vaccine over having a full-blown case of covid. That is almost unbearable for anyone with ALS, during covid and the weeks and weeks following it.

    • #23431
      James
      Participant

      Paula, I also have the so called coincidence of being diagnosed with ALS after the 2nd jab.  I was in good health, but then started downhill slide.

      Jim

    • #23432
      Greg Herrin
      Participant

      I started experiencing ALS symptoms (left leg weakness & foot drop) the day after I received the COVID vaccine in May 2021.  My weakness progressively increased leading to my ALS diagnosis 10 months later.  My PCP advised that I take  no future vaccinations, therefore I only received only the initial COVID vaccination.  Zero symptoms prior to receiving the vaccine.  Highly unlikely that this was a coincidence, the vaccine triggered whatever causes ALS in my case.

    • #23433
      Dagmar Munn
      Keymaster

      I tend to agree with John about ” the vaccine possibly accelerating the otherwise slow progression of ALS.”

      I have assumed my ALS actually began on a cellular level in my body, way before my symptoms became noticeable. Therefore the experience of having a covid vaccination might be just the catalyst needed to spur on progression and have symptoms become visible and noticeable.

      • #23450
        john hamilton
        Participant

        Interesting, Dagmar! Unfortunately, if it was my message that you’re referring to, I must have accidentally zapped it when I tried to edit it later!

    • #23443
      Shawn Shevalier
      Participant

      Paula,

      Were you Covid Vax skeptical beforehand?

    • #23444
      Beth Rookey
      Participant

      I’ll throw my 2¢ in – I’ve had ALS 30 years & was positive for Covid in January ’21, asymptomatic for the most part. I watched my Dad battle it for 2 months, in the hospital where it was touch and go for a while. When they offered the vaccine, I took it – 2 doses & 2 boosters of Moderna and no side affects or progression of symptoms. I didn’t want to deal with Covid so I trust the science & my neuro!

    • #23446
      Henry Feinberg
      Participant

      Thank you for sharing your story.

      I am almost 80 and was  diagnosed with ALS. In December 2022. Until June 2021 I was walking 4 miles a day.

      Then shortly after receiving my second Covid  shot, I developed a limp. I attributed this to arthritis but subsequent cortisone shots while eliminating my discomfort, the limp stayed on.

      Then in late November 2021 I received my first booster and shortly thereafter my balance started to decline. While I could still walk a mile, I could no longer stand still in one place without shuffling my feet. I also lost some fine motor skills in my right hand.

      So —I have what I have – is it Covid vaccine related?—-nobody can tell me it’s a coincidence; not even the docs at OSU and the Cleveland Clinic. The Covid vaccine is responsible for triggering these symptoms.

      Henry

      • #23452
        Shawn Shevalier
        Participant

        As many of you are aware, Covid has become highly political.
        I suspect people like Paula and Henry are on the Dunning-Kruger side of those politics.

        Paula stated that “we” won’t be getting any further vaccines and Henry said that”nobody can tell me it’s a coincidence”. It sounds like these people have convinced themselves regardless of anything the science produces. That’s not to say that the science may not eventually validate their conclusions, but they likely won’t accept it if it doesn’t.

        Why does it matter? If Henry and Paula’s husband get Covid and die because their lungs are weakened by ALS, that’s on them.
        But if their unscientific certitude influences someone who otherwise would have gotten the shot at the advice of their Healthcare professional, that’s irresponsible.

        As someone who has had ALS a few years, I can tell you that your progression rates are not unprecedented. I got ALS before Covid, I’ve had all of the shots, and my progression matches the standard rate over time.

        For those of you following this thread for input on your decision making, I will leave you with this: rarely is anecdotal evidence better than actual evidence derived from the scientific method.

        Shevy

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